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Excerpt: This week the wait list to receive lifesaving AIDS medication through the nationís AIDS Drug Assistance Programs grew to 6,235 people across 10 states.

The number of people waiting to receive medication through state-run AIDS drug programs has increased nearly 4,000 percent since August 2009, according to the National Alliance of State and Territorial AIDS Directors . . .

As of February 10, 2011, there were 6,235 individuals on AIDS Drug Assistance Program (ADAP) waiting lists in 10 states. This is a 32 percent increase from the 4,732 individuals on the December 2010 ADAP Watch. Eighteen ADAPs, nine with current waiting lists, have instituted additional cost-containment measures since April 1, 2009 (reported as of February 2, 2011). In addition, ten ADAPs, including two with current waiting lists, reported they are considering implementing new or additional cost-containment measures by the end of ADAPís current fiscal year (March 31, 2011).

Of course, anytime now FL ADAP will be bankrupt and 6,500 people will technically be dropped and should be added to the roles of the wait list; while Virginia will soon be dropping 760 from their ADAP program to fend for themselves. It won't be long until the Watch Report should show over 13,495 people - some without any access to meds and many seriously in jeopardy of losing all access.

I agree. I was thinking about why the Watch Report was updated so quickly this time - especially when waiting another week until it's normal update time could perhaps capture the FL or VA additions. I would imagine that now until the end of March (roughly the next 6 wks) we'll see frequent updates and huge increases, as ADAPs run out of money for fiscal FY2010 and have to wait until April for FY2011 to start and more funds to be available.

I hope that every person, who gets any form of government supported health care, like Ryan White or ADAP is chilled to the core, regarding the underfunding of HIV services. We are not talking theory here, as real Americans are dying, literally, because of no access to HIV medications. My hope would be, that you find this beyond reprehensible and would make those feelings known to every level of government that exists. The HIV Community has been fighting for decent funding for almost 30 years and I can assure you that we have many enemies, from the local level stretching all the way to congress. Governments are looking for any way to save a buck and if they can keep underfunding our services, then we will continue to die and will have no one else to blame, but ourselves.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I hope that every person, who gets any form of government supported health care, like Ryan White or ADAP is chilled to the core, regarding the underfunding of HIV services. We are not talking theory here, as real Americans are dying, literally, because of no access to HIV medications. My hope would be, that you find this beyond reprehensible and would make those feelings known to every level of government that exists. The HIV Community has been fighting for decent funding for almost 30 years and I can assure you that we have many enemies, from the local level stretching all the way to congress. Governments are looking for any way to save a buck and if they can keep underfunding our services, then we will continue to die and will have no one else to blame, but ourselves.

I was on the Louisiana ADAP which has a waiting list and I am glad I was able to become privately insured which will guarantee someone else a chance to get the meds. Although it ruins my chances of going back to school this year as I don't think I could navigate fulltime employment and fulltime school.

Last week the wait list to receive lifesaving AIDS medication through the nationís AIDS Drug Assistance Programs grew to 6,452 people across 11 states. Idaho is the newest state to implement a wait list.

The number of people waiting to receive medication through state-run AIDS drug programs has increased more than 4,000 percent since August 2009, according to the National Alliance of State and Territorial AIDS Directors. Federal and state governments have reacted with little urgency, however. While President Obamaís 2012 budget allots $105 million in additional dollars to the programs over 2010, itís clear that the problem will not be solved unless states significantly increase their own contributions to the programs . . .

If you've not read it, there's a good detailed article on poz.com about the ADAP situation in Ohio. Not only have they changed the eligibility threshold like other states, but they're also requiring that you have AIDS not HIV, even if you qualify financially.

can you tell me where you found info about the medical criteria? Most articles I have read about this situation only refer to the "sickest patients". I haven't seen an actual definition of what that means. Thanks

can you tell me where you found info about the medical criteria? Most articles I have read about this situation only refer to the "sickest patients". I haven't seen an actual definition of what that means. Thanks

Actually I just made the inference, so I could be wrong about the particular.

you're probably not far off-base though, I would imagine. I just knew that I hadn't come across an exact description of this new criteria yet. They'll probably wait till the last minute to unveil that wording and totally trip everyone out.

Boy I tell you what! Hearing all these changes happening in so many states, in a strange way, actually makes me happy to be so below FPL and to have been diagnosed with AIDS - because being that poor and having nearly died a couple of times has enabled me to keep access to meds and health care coverage over all these years.

(Hey! There's one for that closed "positive positive thread"! I could be fighting for or losing access to meds; but thanks to AIDS I have health care coverage and meds )

Boy I tell you what! Hearing all these changes happening in so many states, in a strange way, actually makes me happy to be so below FPL and to have been diagnosed with AIDS - because being that poor and having nearly died a couple of times has enabled me to keep access to meds and health care coverage over all these years.

Yeah Mikie same here, I'm glad I'm way below that FPL and have had AIDS for the last 15 yrs. now, if I could only get past that 1 dollar overage mark, that prevents me form getting any help form my State Medicaid office, but that aint gonna EVER happen in my lifetime, so I still qualify for ADAP at least for now

« Last Edit: February 22, 2011, 05:29:49 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Yeah Mikie same here, I'm glad I'm way below that FPL and have had AIDS for the last 15 yrs. now, if I could only get past that 1 dollar overage mark, that prevents me form getting any help form my State Medicaid office, but that aint gonna EVER happen in my lifetime, so I still qualify for ADAP at least for now

Am I understanding correctly that you're below FPL and don't get Medicaid? Good grief! What is the $$ eligibility amt then? Are you on Medicare?

Because I was awarded disability back in 2000, I have Medicare coverage. Because I make several thousand below FPL, I receive state Medicaid. I also receive "extra help" from Medicare that covers the the yearly deductible and the coverage gap along with paying a portion towards my meds. Then there's a SC state program that pays my monthly Medicare premium payment. (I had this same arrangement when I lived up in Ohio.)

Just make sure you can document your AIDS diagnosis if it was a long time ago. I've now had five doctors since my AIDS diagnosis, and I'm lucky that for whatever reason (and it wasn't anything thought out) I had copies of those 1993 labs in a manila folder buried in my basement when I still lived in NYC and needed them once in 2002, so now I still have them. Of course nothing was fully computerized with lab numbers back in 1993.

Am I understanding correctly that you're below FPL and don't get Medicaid? Good grief! What is the $$ eligibility amt then? Are you on Medicare?

Because I was awarded disability back in 2000, I have Medicare coverage. Because I make several thousand below FPL, I receive state Medicaid. I also receive "extra help" from Medicare that covers the the yearly deductible and the coverage gap along with paying a portion towards my meds. Then there's a SC state program that pays my monthly Medicare premium payment. (I had this same arrangement when I lived up in Ohio.)

Yes your correct, however I'm not 200% below I'm above this, it still get me the ADAP tho I do have medicare tho, just not any Medicaid in my state, they told me back in 2009 I make $1 too much, but I'm about -175% to 200% above FPL, now you know this varies form state to state right? if i moved to a larger State. like NY or Calif. I'd get this....right? and at that level my extra help is only 75% so I cannot even use part D with out any medicaid help, that is why I'm on ADAP and in my States Risk-poolinsurance program , of course I had to sign over all of my medicare A & B to do this....so ADAP & Ryanwhite, I 'm still poor enough to get that in my state.....

« Last Edit: February 22, 2011, 06:27:40 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

dang! That reminds me I keep forgetting to make a thread talking about that. I've already spoken to several people (here and in person) who have moved from one state to another WITHOUT checking to see if they were eligible for of if there even were benefits in the state they were moving to. ADAP/Ryan White, Medicaid, welfare and Food Stamps are all state-run programs with different benefits and different eligibilities in every state.

Just make sure you can document your AIDS diagnosis if it was a long time ago. I've now had five doctors since my AIDS diagnosis, and I'm lucky that for whatever reason (and it wasn't anything thought out) I had copies of those 1993 labs in a manila folder buried in my basement when I still lived in NYC and needed them once in 2002, so now I still have them. Of course nothing was fully computerized with lab numbers back in 1993.

Yeah, and I don't have any of that anymore, just the ICD9 award letter for my SSDI dated FEB 1998, however i did bring my medical records from California, and as far as I know they go back all the way to1990 when I was on AZT & DDI, so my guess all isn't lost, I hope I gave (whatever I could get form the state I lived in) and my doctors office put it into my medical records ( I know this cause) when they bring up my records the file is so thick, and it won't even close, so they must still be in there......I've been lucky tho since 2002 I've only had 2 HIV/AIDS Doctors, and I'm only on my 2nd one 3 Doctors if I count 1998 with my AIDS diagnosis ......

« Last Edit: February 22, 2011, 07:06:11 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

I'm actually trying to finagle exactly how to keep my meds covered and return to school and short of just not working at all, I can't figure out how to do it. I'm also currently on ADAP but am using my own health insurance to get my meds. Think I'm gonna start using the ADAP again in order not to lose it since if I fall off the list I then get back in queue behind about 1000 people. Are they trying to kill people, do they just not care, or is it seriously all about the piddly amount of money?

dang! That reminds me I keep forgetting to make a thread talking about that. I've already spoken to several people (here and in person) who have moved from one state to another WITHOUT checking to see if they were eligible for of if there even were benefits in the state they were moving to. ADAP/Ryan White, Medicaid, welfare and Food Stamps are all state-run programs with different benefits and different eligibilities in every state.

It doesn't make much of a difference, since the state benefits regarding ADAP can change at the snap of a politician's fingers, expecially during this period of the greatest economic recession since the Great Depression.

When I moved from New York to Connecticut in 2009, I checked beforehand that I would be immediately eligible for ADAP benefits. I also checked on the history of ADAP in the state and the general political tenor regarding such issues. Everything was exceptionally favorable. There was no wait list, there was never a diminution of the drug formulary, there was never a change in income qualifications, etc. There was nothing negative whatsoever.

Now, as of February 16, the first Democratic governor here in 20 years (ultimate irony), has proposed in his budget, to a state legislature that is also for the first time in quite a while controlled by the Democrats, to eliminate state funding for ADAP. Double irony (or tragedy): The only state-wide AIDS advocacy organization, Connecticut AIDS Resource Coalition, whose membership is comprised only of the ASO's throughout the state, strongly endorsed him.

I certainly would not have moved two years ago if I had known then, or even suspected, that this would be possible.

« Last Edit: February 23, 2011, 02:52:53 AM by edfu »

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"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

just like when the first wave of this epidemic hit America and people had to protest for meds and health care, once again it's time for many people who have been silent to speak out. I've been surprised that I haven't heard about any huge rally in Florida yet where things are so very bad.

A small glimmer of hope in this scenario is that with all the proposed cuts in many state and federal plans to planned parenthood, medicaid, and all sorts of health services, we're not alone in our protests this time. the recent rally in SC involved not just the HIV task force and ASOs, but hospitals, teen pregnancy agencies, mental health agencies, medicaid advocates, hospice advocates, elderly care facilities etc.

There's a part of me that is becoming very scared that in the next two yrs we're going to start seeing people in America dying of AIDS again. the shame will be that this time, unlike during the first wave of this epidemic, there are meds that could, no should, save those lives

Actually I just made the inference, so I could be wrong about the particular.

Not definitive word from our lords and masters, but someone else is making the same inference:

"Ohio has also reduced their formulary for medical eligibility, which essentially means that only the 'sickest' HIV-positive individuals (those with lowest T-Cell counts and high viral loads) will qualify for financial assistance."

I'm actually trying to finagle exactly how to keep my meds covered and return to school and short of just not working at all, I can't figure out how to do it. I'm also currently on ADAP but am using my own health insurance to get my meds. Think I'm gonna start using the ADAP again in order not to lose it since if I fall off the list I then get back in queue behind about 1000 people. Are they trying to kill people, do they just not care, or is it seriously all about the piddly amount of money?

I think that if your healthy enough to still work, you should keep working and keep your ADAP, I wouldn't let that go if I were you, even if you still qualify for it, as I'm sure you do, loosing ADAP is a lot harder to even get now-a-days, so do whatever it is that you need to do to get back on it, or at least keep it.

when I lived in California 12 yrs ago I was on ADAP and I was 500% above the FPL, it was cheaper for me to use ADAP then it was to pay for all of my Meds and I even had an HMO back then, and my MEDS were 25 dollars a pop, so you times that by 22 pills in a 1 month period, and that came out to $550 a month, with ADAP they didn't cost me anything

« Last Edit: February 23, 2011, 09:37:04 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

which essentially means that only the 'sickest' HIV-positive individuals (those with lowest T-Cell counts and high viral loads) will qualify for financial assistance."

ouch! Wonder if that means that the person in the hospital diagnosed with PCP and AIDS just 3 yrs ago whose life has been saved and health miraclously turned around from HAART is now going to lose access, see his health deteriorate, and end up back in the hospital with "AIDS" before he can get assistance to get drugs again?

ouch! Wonder if that means that the person in the hospital diagnosed with PCP and AIDS just 3 yrs ago whose life has been saved and health miraclously turned around from HAART is now going to lose access, see his health deteriorate, and end up back in the hospital with "AIDS" before he can get assistance to get drugs again?

Meh...wouldn't it just be cheaper to give the HAART drugs then staying in the Hospital, you would think that somehow, they would figure that out cost-wise unless the they want to fall back to the Ronald Ragan yrs. when it was better and cheaper to just let you DIE and some people say he was the greatest President that ever lived, well, whoever says that, I take it they didn't have HIV/AIDS back then, and didn't know anyone that DIED.....I remember those days very well

« Last Edit: February 23, 2011, 10:43:10 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Yeah, and I don't have any of that anymore, just the ICD9 award letter for my SSDI dated FEB 1998, however i did bring my medical records from California, and as far as I know they go back all the way to1990 when I was on AZT & DDI, so my guess all isn't lost, I hope I gave (whatever I could get form the state I lived in) and my doctors office put it into my medical records ( I know this cause) when they bring up my records the file is so thick, and it won't even close, so they must still be in there......I've been lucky tho since 2002 I've only had 2 HIV/AIDS Doctors, and I'm only on my 2nd one 3 Doctors if I count 1998 with my AIDS diagnosis ......

It's a good idea to follow Miss P's advice and inquire about the content of your records. You are assuming on the basis of a thick file that proof is in there. If you tell one of your provider's nurses that you want to check AND get a photocopy (or copies) of records for yourself, then you will know for sure and have a small, vital set of records at home, too.

Meh...wouldn't it just be cheaper to give the HAART drugs then staying in the Hospital, you would think that somehow, they would figure that out cost-wise unless the they want to fall back to the Ronald Ragan yrs. when it was better and cheaper to just let you DIE

of course it's cheaper. While it seems like that should go without saying, that isn't the right approach to finding a solution. Just like many of us, when a disease doesn't concern you, then you don't know much about it. How many of these state legislators actually understand HIV, much less the ADAP issues? The Federal gov't has still been supplying funds because many there do understand these issues; however I believe that because many state legislatures are the ones defunding ADAP (and other health care issues), it could very well be out of ignorance on the topics.

(take me own state for example. Here many Tea Party Republicans were voted in last election, not because they understood the health care problems of our citizens; but they elected to stop spending state funds on anything and everything.)

Recently the SC HIV/AIDS Task Force partnered with Harvard Law School to produce the SHARP report - a comprehensive guideline to HIV-related health issues (ie prevention, education, treatment) in the state, along with projected costs of basically doing nothing vs. actually trying to control the HIV epidemic. (SC is either #8 or #9 in the highest new infection rates, so it's definitely a problem here).

Because so many of our state legislators turned over this past election (and mainly turned Republican), we felt it was neccesary to produce such a report to make sure these new congressman actually knew of the issues and understood the ramifcations. We gave them a month and a half to get settled into their offices and learn their way around the capital and then we sponsored a rally/press conference in the State House Rotunda offically presenting this report.

Afterwards a group from my ASO, went up to the chambers and spent the rest of the afternoon calling our legislators out for a meeting with us. We explained the most basic tenent of the report to the 6 representatives and 5 senators over our tri-county area (they could invest $4 million of taxpayer money into SC ADAP and cover meds for everyone; or we can see $37 million of taxpayer money spent on hospital costs as all those people die. Paying for ADAP literally saves lives and $33 million! plus ADAP allows HIV+ people with meds to continue working and paying taxes, therefore covering part of that $4 million investment). We put a copy of this report, along with a 2 pg summary, physically into their hands.

(hopefully we will be remembered by at least 3 of these guys as we were the very first group to speak to them about an issue since they were sworn into office)

Now they know; now they have no excuse; and now we can hold their feet to the fire. Now each one that votes to defund ADAP (and/or Medicaid) will be willfully sentencing SC citizens to death.

It's a good idea to follow Miss P's advice and inquire about the content of your records. You are assuming on the basis of a thick file that proof is in there. If you tell one of your provider's nurses that you want to check AND get a photocopy (or copies) of records for yourself, then you will know for sure and have a small, vital set of records at home, too.

Yeah, I should do that, however w/ 300 t-cells and at least 12 to 15 yrs of an AIDS diagnosis, I don't think I 'm in danger of losing any benefits, are have a need to prove my AIDS diagnosis, I've NEVER gotten over the 400 t-cell mark for that long, and I probably never will according to all of my Doctors, however, they do saythat if I continue my HARRT Meds, I have a very good change of living at least another 10 more yrs. and ifthat is all I have left, that's good enough for me, after all I'm 55 yrs. old, isn't that considered a senior, age -wise

« Last Edit: February 23, 2011, 11:27:08 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

I guess I'm conservative in the vital documentation arena and if my doctor's office were the only place an essential document relating to my health existed, I'd get a copy---it's free insurance. Age 55 is a senior in some settings like AARP's membership department and more, like discount offerings. I just found this...wait until you see where you can get a discount for being 55+!!!

LOL...well those of you who are lucky enough to have 600 to 1200 t-cells, you might need to worry about proof, but I'm not worried about it, I know I'll never reach that level, and besides, I'm sure if i ask my current Doctor as far as proof of my AIDS diagnosis, I'm sure that wouldn't be a problem at all, Truman-Street-HIV/AIDS Clinic here in Albuquerque, NM keeps meticulous records, just ask Mark about how well the State of New Mexico keeps HIV/AIDS medical records, if SSA wants info, they certainly know who to ask

« Last Edit: February 23, 2011, 12:08:44 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Ohio has never provided full medication coverage for every HIV-positive resident in our state. Like most states, we rely on federal and state funding to operate our program and the cost-containment measures implemented last July were not taken lightly. It was with heartfelt recognition of the seriousness of the financial situation of our program and the medical condition of our clients that we sought input from impacted stakeholders (including clients, case managers, advocates and the Ryan White Part B Advisory Board of infectious disease physicians, nurses, social workers, pharmacists, advocates and consumers from around the state). ODH believes that the program with reasonable financial eligibility requirements and other fiscally responsible measures can continue to provide care for the largest number of clients possible. This thoughtful, deliberate approach has allowed us to begin to enroll clients from our program waiting list.

The OHDAP formulary includes every FDA-approved medication for the treatment of HIV. Further, we have medications for the treatment of a number of related health concerns. ODH will continue to spend its resources to provide care to the sickest and poorest Ohioans living with HIV/AIDS.

It seems the Ohio Dpt of Health doesn't think there's much of an ADAP crisis in their state. They're also fraudulent in their claim about their waiting list. I just posted the Feb 18th numbers ADAP Watch numbers in which OH added another 15 people to the list in the last 7 days.

I wrote back to ask about this number discrepancy. are the "new enrollments" so new they haven't shown up on the report yet? Or are they enrolling while still adding to the waiting list (for example, did they enroll 10 onto ADAP while adding 25 to the wait list to show the +15 change last report)?

gee, maybe it's a good thing you moved outta that State mikie...........ya think?

I don't know. SC evaluates their Food Stamp calculations different from the feds and I lost half my food stamp amount. If I wasn't living with my Mom, I would have had to move back to OH to not starve. Not to mention, that SC not only wants to defund ADAP (which I don't use) but wants to defund Medicaid! And if they don't abolish either program there's a bill pending requiring the state to only pay for generic meds. Since only AZT and ddI come in generic form, I guess staying here means I could be going back to AZT monotherapy.What fun! not!

I turn 49 in about 19 days, so now if I can only make it another 6 yrs.I can get 10% off my Jr bacon cheeseburgers @Wendys I don't know. SC evaluates their Food Stamp calculations different from the feds and I lost half my food stamp amount. If I wasn't living with my Mom, I would have had to move back to OH to not starve. Not to mention, that SC not only wants to defund ADAP (which I don't use) but wants to defund Medicaid! And if they don't abolish either program there's a bill pending requiring the state to only pay for generic meds. Since only AZT and ddI come in generic form, I guess staying here means I could be going back to AZT monotherapy.What fun! not!

Meh......well that's some medieval shit that monotherapy, and going back to the dark-ages-of aids, well let's hope not, I don't know why, but Ronald Regan still comes to mind when I think of going back to the dark-ages of this disease, now that, I must admit, is truly some scary SHIT

« Last Edit: February 23, 2011, 12:36:57 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

We will begin enrolling people who have been on the waiting list the longest into the program this month. We have funds that will help us to enroll at least 100 people from the waiting list into the program.

While we enroll these clients into the program the waiting list will still exist and eligible clients will continue to be added to the waiting list.

so they hadn't really enrolled anyone yet even though they said restricting benefits had allowed them to save enough $$ to enroll people; but they're going to start enrolling sometime this month. Adding a bit more confusion is that this ODH rep says those who have been on the waiting list for the longest time will be the ones to be enrolled which is not the same requirement as being the "sickest" to be kept on ADAP when others get disenrolled.

Since they haven't actually enrolled anyone yet, I do have to question exactly where the funds are coming from to enroll these 100 people? Is it from the savings of changing the eligiblity requirements to having to be the sickest to keep ADAP or do they already know what funds they'll be receiving by the passage of the Hastings amendment?

Is it from the savings of changing the eligiblity requirements to having to be the sickest to keep ADAP or do they already know what funds they'll be receiving by the passage of the Hastings amendment?

See my latest post today in the "Rep. Hastings Amendment" thread.

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"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

thank you. I did just see that. It's so crazy trying to make sense of the FY between the various states and the Fed.

(thankfully I get my disability check direct deposited on the third of each month! Although my Mom (whom I live with) and her husband don't get their SS checks until the 6th and the 14th)

For example it's Florida's FY2010 ADAP that has gone bankrupt, so they'll be dipping into the FY2011 money as soon as it rolls around in April. I would bet that FL didn't expect this bankruptcy and did not budget appropriately for this upcoming yr either. It won't be long then until as they'll be deciding the FY2012 budget that the FY2011 ADAP will probably be going bankrupt (maybe before actual 2011 ends??).